Heaven or Hell

I have lived on Tamborine Mountain for 12 years and I love it. Although I have fibromyalgia and Oesto arthritis I was coping quite well until approximately three years ago when new symptoms emerged occurring with varying severity and several times a year. They appear to be triggered by something odorless and invisible in my environment and seemed to have a reoccurring pattern.  I believe it’s linked to pesticides and herbicide spraydrift.

In the last two years they have intensified exponentially and in January included severe unrelenting neurological pain in my thigh. Some other symptoms are burning sensation in my face, lips gums, my voice deepens and my nausea increases. I become light headed, bilious, my skin itches and I sometimes become disoriented. I have mild elevated temperature and thick mucus runs down my throat. I have a high pitched shrieking in my head/ears with pressure at the base of my head.  

Usually the first round of symptoms start December to mid January and last for two to three weeks before subsiding. This time they started around the 10th and were worse between 15th and 26th January. The allergic reactions are persisting to date; my immune system can’t seem to shut down and my nervous system is compromised

As long as I am exposed to that trigger the impact on my life overwhelming. I develop a hyper-sensitive sense of smell/taste to chemical type odors whether natural or manmade. Sometimes I don’t smell anything, I just react.

 I can’t sleep in my bed (feels like bugs are crawling all over me) cannot take a bath (burning sensation on my skin) and things so bazaar I still cannot comprehend them. As I daily experience 60% symptoms on the list and most are attributed to my fibromyalgia and arthritis, it makes it harder for me to discern, but this is different.

I have been given a Segre CN P2 CV Class P2 carbon mask which helps and out of desperation I carry one with me at all times. I am also having a safe room built into my home as a semi sealed room and good air purifier gives me relief.

 My family and friends find it hard to comprehend as usually I appear quite well and I am grateful to the ones who stick by me even though they don’t always get it.  The few who do understand are very ill too and I value their information and support. 

Trying to get to the bottom this has been a nightmare due to the intermittent nature of the attacks and variety of potential causes, however recently through dialogue with others I have met several people whose symptoms similar to mine.

I was particularly shocked by the number of cancers and the rare and aggressive nature of some i.e. Multiple Myeloma that destroy bone and have been linked to pesticides and herbicides. There are also many autoimmune diseases.  Does this sound familiar?  

It’s hard to accept if you’re not affected but we cannot address what we are afraid to discuss. With fragmented information it’s easy to fixate on one thing as a trigger thereby missing a bigger picture that can only become apparent with community effort.  As a group there is more information and discussion and this will help make us more aware.

We can also support each other during these times as in my case attacks happen suddenly and then it’s too late, my brain scrambles.  This is compounded by the fact that few can comprehend the intensity of this illness which some hypothesize as Multiple Chemical Sensitive’s; hence it can be very isolating.

If your life is disrupted by cancer or your health or the health someone you love is also being compromised by something your doctors can not explain, please believe them. Also assist them in recording their symptoms, dates, time and locations as they won’t be in a frame of mind to do so. Let’s see if a pattern emerges over the coming year. 

For those of you who live alone, I know it can be overwhelming when illness takes over and there is no empathy or support, you feel like giving up.  Well you are not alone, there is support. We will make progress by sticking together and sharing information quickly, i.e. when symptoms are triggered.

If you wish to share but have your information remain confidential, please email me directly on rk33@bigpond.com  or   ph:  5545 4232   your privacy will be respected.

Thank you, Robyn